How to build communication with an Autistic person
How to Build communication with an Autistic person
Some autistic people develop speech later in life, for some this may be limited and for others, like Joshua our son it can become fully developed after years of delay and for some it may never develop at all.
Autistic people in general have difficulty communicating with people but when it comes to the use of language there are several reasons why some autistic people can use language and others can not.
Here’s to explain in more detail.
Non verbal or pre-verbal autistic’s may have a speech disorder called Apraxia of speech, which means that they have trouble speaking, they may know what they want to say but have difficulty getting their lips, jaw or tongues to move in the way they should to form speech. Apraxia of speech would therefore interfere with there ability to say what they want to.
For us to be able to speak our brains need to send signals to the mouth to coordinate the movements needed to speak, apraixa effects these pathways and therefore the messages do not get through to the mouth, and speech can not be formed - very frustrating for the person right?
Another reason why autistic’s may not speak may be due to them not developing the verbal language skills needed to speak. In some children they can lose language skills , for Joshua our son his speech was delayed and communication was immature until he was around 7/8 years old. To add to this his understanding of the world was also limited, he also regressed and lost previous acquired skills in other areas of his life (this being another story).
Autistic people, and not only children here, may also use echolalia, which means to repeat what someone else has said. Someone may use this as a form of communication as they are not just repeating back what you have said in an attempt to annoy you as you may think, they maybe repeating what you have said to try and understand you, they may also be then considering how to respond by doing this. Joshua uses echolalia when he is unsure of what has been asked of him, we now know to give him the time he needs to respond, or be patient and repeat what we have said until he understands, or even change what we have said so that he can understand. Its rather fascinating that he now at the age of 13 remembers times when he really couldn’t understand and now likes to speak to me about it, he says that its good he can reflect back and recognise this time in his life, he now has a greater understanding of not only the world and language but himself his feelings and emotions.
There can also be times when speaking, and talking is very tiring to an autistic person, its not because they do not want to talk to you, its just that having to listen, understand and then respond takes a great deal for the brain to process, hence why social events can be so exhausting and are often avoided. I spent a life time having to pretend in social situations or “mask” how i was really feeling. My parents did not understand me, and i spent my childhood wondering why i felt exhausted uncomfortable and over whelmed when we were visiting people, i was’nt able to tell them how i felt, i was just annoying and hard work to them, a “attention seeker”. I was forced to be sociable, talk, entertain my family as i was excellent at mimicking people and doing impressions of famous people, i still hold this skill now and are able to mirror other people extremely well, even without them knowing! I would say that’s it has only been the past few years - and im now 43, that i have finally began to understand myself and know what i have to do “if” i have to be in a social situation and communicate with people- which obviously happens being a charity founder. I either pass things on to my partner Jamie to do instead of me (avoidance), or if i have to be involved i need to take a few days after an event to recover from the overload. I find it easier to be around other autistic people, or those who have severe and complex needs. Silence is golden they say, and i can honestly say that this from my point of view is often very true - i could quite easily not speak much.
“ Choosing not to speak”? Or medically termed as selective mutism.
Selective mutism is a severe anxiety disorder where a person is unable to speak in certain situations. It is not that the person is “choosing” or refusing consciously to speak as i quoted, its the sheer expectation placed upon them to talk that triggers a freeze response which renders them unable to talk. It is therefore considered by experts as a fear or phobia of talking to certain people and is known to be associated with anxiety. Interestingly there is a misconception that someone with selective mutism is being manipulative or trying to control a situation or is Autistic, there is no evidence of there being a relationship between this and autism however people can have both, and evidently do.
As a child i suffered with social anxiety and generalised anxiety in most situations and therefore developed a “lisp” this again being a speech defect. There have been many times throughout my life when i have been highly stressed and anxious and felt numb and not been able to speak at all, especially during a melt down. The best way to describe this being that you are trying to say something but there is a block holding back the words, which can oddly feel quite relieving . The block gives you a break so to speak ( pardon the pun) to regain and process what is happening around you.
Joshua also becomes selectively mute in situations where he feels he has no control - for example going to one of his medical appointment’s, or even when we start a new project as a charity. He became selectively mute most recently at one of our last charity events, he wanted to sit away from everyone, with his back turned and would not respond to anyone, other then me or his Daddy. He was highly anxious in this situation however was still able to express this to me throughout the day, he could verbally say how he was feeling but was mute to others. I had offered him constant reassurance and let him know that what he was feeling was not unique to him that day - i felt it too. Our clear lines of communication helped him to get through this day, he actually stayed the whole time where as in previous years we would of had to leave, immediately.
In regards to day to day communication, considering Joshua’s speech delay it took us years to be able to understand what Josh needed. We went through a stage of literally daily melt downs while he was in school - which was the worst time of his and our lives ( another story here). We can honestly say that his communication only began to improve once the daily anxiety of having to go to school had been taken away from him. I truly believe that if we had carried on and not withdrawn him, he may not have developed the language skills he has today.
We home schooled him from the age of 5, he is now 13. It took us almost 2 years for him to recover from the early years experience, and 3 years for us to begin to really understand him. I am with Joshua 24/7 and so can now read him like a book - which freaks him out sometimes, how i just know how he is feeling! I guess this is mainly because i can see so much of myself in him and can therefore understand what his needs are, but this in itself takes a large amount of patience, and for those parents who are neurotypical this is something that may not always come naturally, may be difficult to master, or can be very frustrating, but it really is the key to getting inside the world of your autistic child.
If you take the time to understand then you will build a wonderful relationship, which i can say i have with my son. But it does take a great deal of bravery, to come away from the “Norm” and learn a different way of viewing the world, for me, this is natural as i am not within the “norm”, but for those who are it can be done if you allow for time.
Tips for communication
Whether the person you are communicating with has language or not the following should still apply
Speak clearly - do not use jargon, or confusing words that may have double meanings
Even if someone seems distracted and you need to communicate, still do so. Some may say make sure you know they are listening to you, meaning gain some form of eye contact, however an autistic person will be listening to you if you are close to them, they do not need to be attentive, they could still be playing, or looking else where, they will hear what you are saying so do not take this for granted or expect full eye contact to communicate
You can use what someone is interested in to gain communication, we did this with Josh in the early days. I would spend hours just playing alongside him, gentle asking questions that were relevant here and there and if i did not get a response would not get offended, i knew he had heard me, he just did not answer, or was maybe not sure what to say, or just didn’t want to speak to me
Do not give too much information as this could cause an overload. Keep things simple, say less and say it slowly - but not condescendingly so
If someone is showing signs of anxiety, pre-meltdown phase, use less language . This is something we learnt with our son when his meltdowns were daily. I found i would freeze myself when it happened to him ( my response to someone in distress) so naturally would not speak but know to not aggravate him further. I will discuss this in more details in another blog about “meltdowns” as this is another complex area
Use visual aids instead of language, even if a person generally has language, sometimes just using one word like “ here” or point to what it is you would like them to do is enough, or you can use photos or PECS as they are known - picture exchange communication system
Avoid using irony, sarcasm or exaggeration. Autistic people tend to take things very literally, i do, and so it can be very confusing to someone if you throw this into a conversation , however both myself and Joshua can be very sarcastic ourselves, we may not get your sarcasm but you will certainly get ours - just to confuse things further!
Some autistic people may have PDA Pathological demand avoidance, which is part of the spectrum, characteristically and in short its described as a condition that includes greater refusal to do what is asked of the them, even activities the person would normally like. For example, even asking someone with PDA to brush their teeth would be placing a high demand on them and they may react negatively. We believe our Son Joshua has PDA, and myself as i really struggle being told what to do, it causes huge amounts of anxiety and distress. Its therefore important to consider that when communicating if someone reacts very negatively when asked to do something who is Autistic they may also have PDA, which would mean that any demand big or small would need to be negotiated in a very different way - i will again discuss this further from experience in another blog post
And finally just be patient! I can not stress this enough. I have had this said to me from other autistic adults when i’ve asked them how best someone could support them with communication, and its is evident in my work and personal experience that patience truly is a virtue!
I hope this blog has helped you to gain a little understanding and insight into how to start building positive communication with an autistic person, i could literally type forever once i get on a subject! I always feel i have missed something or the way i write may come across as jumbled as there is so much i like to say. If i was to explain this verbally it would be very jumbled indeed. Please do correct me if im wrong with any points i have made as this information is based upon myself and my sons experiences, plus the knowledge built up over many years of working and studying (however if you do decide to comment please be mindful how i will take your communication) !
To conclude, We are all able to communicate whether this be verbally, or non verbally. Animals do this naturally everyday of their lives and seem to get on pretty well!
There is so much more to find out about communication and autism. You can do your own research however do make sure if you search the internet that articles have been medically validated or are from a reputable source - there is a great deal of rubbish out there regarding autism!
Please do feel free to share this blog post and add comments of your own experience or further information on the subject of communication.